Carers Guide

Looking after yourself

and the person you care for

What is a carer?

CONTENTS

A carer is someone who looks after a partner, family member, friend or someone
else who couldnt manage without their help. Carers may look after that person all of
the time or just some of the time, and they arent paid for the support they provide.
If you look after someone with multiple system atrophy (MSA), you may not see
yourself as a carer or be aware of the wide range of support available. Its only
natural to want to put the needs of the person with MSA first, but its really important
that you think of your own needs too. Caring is often physically and emotionally
demanding, and if you dont look after yourself, you wont be able to provide the
best possible care and support.

Things to think about early on

04

Where to find support

05

Getting help with practical things

06

About this guide

Caring from a distance

12

Staying healthy and stress-free

14

This guide addresses some of the worries or problems you may face if you care for
someone with MSA. It looks at the practical, physical and emotional aspects of being
a carer.

Looking after yourself

16

Useful contacts

18

At the back of the guide youll find a list of useful contact details for organisations
that can provide further information and support. If you have a question that isnt
covered, please dont hesitate to contact us at the Trust.

A world free of MSA

Carers Guide | Looking after yourself and the person you care for

03

Things to think about early on

Where to find support

If someone close to you is diagnosed with MSA, many of the ideas and plans that you
had for the future will change. Thinking ahead and talking things though with the
person with MSA and health and social care professionals can help you prepare for
whats to come. Here are a few of the questions you may want to ask yourself.

There is plenty of information and support available for carers, from a wide range of
sources:

Practical aspects

Do you work and, if so, would you like to continue working while caring?
Is flexible working an option for you?
Can you afford to give up work? Do you have a mortgage to pay off? Do
you have access to a pension or savings?
Are you aware of your benefit entitlements, or do you need more information?
Do you have children or other family members to care for?
If you live with the person you care for, can you make any adjustments to
your home, for example, bringing a bed or washing facilities downstairs?
Is there any carer training available in your area that may help you?

Physical aspects

How is your health in general? Are you physically able to care for someone?
Are you eating properly and getting exercise?
Are you getting enough sleep?

Emotional aspects

How will caring for the person with MSA affect your relationship with them?
How will your relationships with other family or friends be affected?
Do you have family or friends to talk to about your
feelings and concerns? If not, who else is
there to support you?
Getting
Is there a carers support group in your area?
some sleep
Are you able to take a break and have
Making sure you
time for yourself? For example,
youll
get a good nights sleep
time to relax, see friends, or maybe
is extremely important. If
pursue a hobby or interest.
youre having trouble sleeping,

The MSA Trust

Carer organisations, such as Carers Trust
Health and social care professionals
Benefits and financial support
Employee welfare organisations, such as Employers
for Carers

The different types of support available will depend

on where you live. Asking for support may seem
daunting at first, but just remember that that youre
entitled to ask for it. Nobody expects carers to
manage on their own.
Contact details for organisations that offer further
information and support can be found at the back of
this guide.

Think ahead
MSA is an unpredictable disease and the
condition of the person youre looking
after may change quickly. When it comes
to caring and living arrangements, try to
consider what their needs might be in one
or two years time, as well as right now.

a little gentle exercise or some

relaxation techniques can help.
For more information, visit
the Carers Direct website
at www.nhs.uk/
carersdirect

04

Carers Guide | Looking after yourself and the person you care for

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05

Getting help with practical things

How hospices can help

After a diagnosis of MSA, its important you have the right support and expertise
around you. Because the symptoms of MSA vary from person to person, you should
ensure there is a team of specialists involved in providing care and treatment for the
person youre looking after:

Its a common misconception that hospices only

exist to provide end of life care. In reality, they
provide a range of free care and support that
can help improve a persons quality of life, no
matter what stage of a life-limiting condition
theyre at.

Parkinsons nurse, community matron, neurology nurse (if available in your area)
Occupational therapist
Speech and language therapist
GP
Continence adviser
Physiotherapist
Social worker
Neurologist (a person with MSA is entitled to at least one appointment with a
neurologist every six months)

Ensuring these specialists are involved early on will make things a lot easier for you.
Besides offering expert support and advice, they will be in a good position to keep an
eye on the condition of the person youre caring for and anticipate any changes or
problems.

Respite care
There are a number of ways you can take a break from your caring role. These
include long or short-term residential respite, where the person you care for is
looked after by someone else in either residential or nursing care.
There is also domiciliary care, where someone comes into your home and takes
over care for a few hours or overnight. Sitting services are similar, but do not usually
provide personal care, for example, toileting. One example of a sitting service is the
Crossroads Care scheme a network of local, independent charities that support
carers and the people they look after, often through the
provision of flexible breaks.
You can find out more about Crossroads Care
and other respite services in your area on the
Carers Trust website.
Many hospices also provide short-term respite
care, including day care or even home visits.
To learn more about how hospices can help
you and the person you care for, at any stage
of their illness, see the next page.

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Carers Guide | Looking after yourself and the person you care for

Importantly, hospices also recognise the

importance of the caring unit around a person
with a long-term illness, so they also offer help for
carers and family members. Some even host support
groups.

What services do they offer?

Hospice care providers offer a range of support, which may include:

Pain and symptom control

Psychological and social support
Palliative rehabilitation helping patients to stay independent
Complementary therapies, such as massage and aromatherapy
Spiritual care
Practical and financial advice

Hospices may offer day care, short stays or longer term admissions. Some may even
provide home visits.
Whatever the location or duration, this respite care can be incredibly beneficial
both for the person with MSA and their carer. The person with MSA has access to
therapies and support and an opportunity to interact with new people, while their
carer gets a much needed break.

Getting referred to a hospice

You can be referred by your GP, hospital doctor or district nurse, though some
hospices also accept self-referrals. Bear in mind that some professionals also make
the mistake of equating hospices with end of life care. Dont be afraid to ask if you
think you and the person youre looking after could benefit from hospice care now.
You can find your nearest hospice online at www.helpthehospices.org.uk or by using
the MSA Trust Local Hub at www.msalocalhub.org.uk

Carers Guide | Looking after yourself and the person you care for

07

Carers assessment

All carers have a legal right to a carers

assessment by their local authority. This
can be done by social services at the same
time as the community care assessment
(sometimes called a needs assessment) for
the person youre looking after, or separately
if the person you care for doesnt want an
assessment.
The carers assessment is your opportunity to
tell social services about the things that could
make life easier for you and help you balance
caring with other aspects, such as work or
family. You can get contact details for your
local authority by calling the Carers Direct
helpline on 0300 123 1053.

Working while caring

If you work, you may need to stay in employment
for financial reasons. Or you may simply enjoy your
job and want to continue working for your own
benefit.
Under the Work and Families Act 2006, any
employees who care for, or expect to care
for, adults have a legal right to request flexible
working. You can find out about the procedure
for requesting flexible working on the Carers Trust
website.

Benefits and allowances

Bereavement allowance - available if

youre a widow, widower or surviving
civil partner aged between 45 and
state pension age.

These benefits were correct at the time this

guide was last reviewed. For an up-to-date
list and to find out whether youre eligible,
check the UK Governments website at
www.gov.uk or visit your local Citizens
Advice bureau.

Continuing
healthcare
This is free care outside of hospital
that can be arranged and funded by
the NHS. It can be provided in any
setting, including a care home, hospice or
the home of the person you look after.
To be eligible for continuing healthcare, the
person you look after must be assessed as
having a complex medical condition and
substantial, ongoing care needs. A team
of professionals will need to carry out an
individual needs assessment to determine
whether they are eligible.
For details, visit www.nhs.uk and search for
Continuing healthcare. In Scotland, visit
www.careinfoscotland.co.uk

There are a number of benefits and allowances

available to carers. You may be entitled to:

Carers allowance - a taxable benefit available

to help look after someone with substantial
caring needs.
Carers credit - a National Insurance credit that builds your entitlement to the
state pension.
Carers premium - an amount that is included in the calculation of any means-
tested benefits you get if youre also paid carers allowance.

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09

Andrews story
Tips on getting help with
practical things
Request a carers assessment Social services can
do this at the same time that they carry out a needs
assessment for the person you look after. Contact
your local authority to arrange an assessment and
always request that it is carried out in person, not
over the phone.
Register as a carer with your GP Most practices offer
priority appointments for carers.
Seek out respite care

This might involve getting
a sitter in for a few hours a week, day care at
a nearby hospice (see page 7) or something
more long term. Try to build relationships with
care providers so that you can get a break
every now and again.
Offload everyday tasks If you arent keen on
the idea of getting someone else in to provide
care, think about which everyday tasks you
could pay someone else to do such as the
housework, gardening or DIY.
If you work, speak to your employer Explore
whether flexible working is an option for you.
Even if it isnt, its good to let your employer
know about your situation so they are aware of
the additional strain youre under.
Talk to your bank and a financial adviser Its a
good idea to do this as soon as possible after a
diagnosis of MSA. That way you can get everything
in order and hopefully put your mind,
and that of the person with MSA, at ease.

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Carers Guide | Looking after yourself and the person you care for

Within just a few years of being

diagnosed with MSA, our dear mum was
almost completely disabled and unable
to do almost anything for herself. Mum
lives in Sheffield, while Im in Brighton.
And my sister Becca has small children
of her own to look after. So mums now
in a care home where she can get 24/7
support and medical care.
Becca took power of attorney for
our mother and dealt with the tough
practical issues that come up when
your loved one can no longer look
after themselves. In the early days, we
werent as united as we needed to be.
Its hard, especially with me living so
far from home. Now, though, were
dealing with this together as a family
unit and that is really important. I try
to visit as regularly as I can.
Our journey of looking after mum has brought guilt, anger and despair at times.
Equally, though, spending time with our mum is now more precious than ever, and
the best advice we can give you is just to cherish it as much as possible.

Dont be afraid
to ask for help
Family, friends and
neighbours often want to
help but dont know how. Give
them specific things you need
doing - like picking up some
milk or walking the dog.
Youll probably find theyll
be pleased to be
asked.

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11

Caring from a distance

There are a number of reasons you might end up living
away from your family and those you care about. And
if someone you care about has a condition like MSA, it
can make the distance feel even further. If youre not
the primary carer, its not unusual to feel helpless or
guilty. Here are a few tips to help you cope with the
situation.
Lend an ear Offering a friendly, listening ear can
help someone offload. Try to speak regularly with
both the person with MSA and their carer. Maybe
you could arrange a weekly call or use video
calling, such as Skype.
Be informed Find out everything you can about
MSA and the type of care and support the person with
MSA will need. It will make a big difference to the carer if they know
that you understand whats involved.

Offer financial support Technology and equipment

can be expensive. If youre not in a position to help
financially, maybe you can offer to find out about
any grants and benefits the person with MSA, or
their carer, may be entitled to.
Plan a break You may want to research
holidays for the person with MSA and their carer
(see the Trusts Travelling and MSA leaflet). You
could even offer to go with them and spend
some quality time together.
Be nice to yourself Dont get so caught up worrying
about your loved ones that you end up neglecting your
own health. You need all your strength and wits about
you, so a good diet and plenty of exercise are essential. Keep
your own doctors appointments and dont put any concerns about your own health
on the back burner.

Stay in the loop Buy a diary and keep track of

appointments and follow-up visits, and call to find out
how appointments went. It will be an enormous
comfort to the person with MSA and their carer, and
will help you feel more involved too.
Plan your visits Try to arrange visits in advance
so you can make maximum use of your time
there. If you can, spend some individual time
with both the person with MSA and their carer.
Scheduling visits in advance will also give you and
them something to look forward to.
Run errands If you live close enough, remember
that small gestures can make a big difference. Maybe
you can pick up the monthly prescriptions, or do the
weekly shop? If your offer of help isnt accepted, dont be afraid
to offer again another time.
Learn about technology The carer may not have the time to explore how certain
gadgets, equipment and other aids may help them and the person with MSA. Why
not volunteer to find out?

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Staying healthy and stress-free

Looking after someone close to you when they need care can be very rewarding,
but it can also be incredibly stressful and exhausting at times. If you dont look after
yourself too, caring can take a serious toll on your own health.
Managing stress Lots of people suffer from stress for different reasons, but being
a carer can mean that youre placed under a considerable amount of stress for
sustained periods. Regular breaks and exercise can help you manage your stress
levels effectively.
Eating a healthy, balanced diet This will help fuel you through your busy days.
Including certain foods in your diet, such as fresh fruits and vegetables, could even
help you reduce your stress levels and get a better nights sleep.
Doing regular exercise Even doing some gentle
exercise a few times a week will
make you feel refreshed and
energised, and may even help you
sleep better.
Getting a good nights sleep If the
person you look after needs care
during the night, you may want to
consider asking for some respite care
on occasion so you can get some
uninterrupted sleep.
The Carewell website has been put
together by Bupa and Carers UK, with
the help of carers. Its Energy to Care
section offers information and advice on
how to reduce stress, eat well, stay active
and ensure you get a good nights sleep.
This information is also available as a PDF
booklet. Visit www.carewelluk.org

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Carers Guide | Looking after yourself and the person you care for

Tips on staying
healthy and
stress-free
Eat breakfast A good breakfast is
essential to set you up for the day and
give you the energy you need to get
through it. Itll also mean youre less
tempted to snack later on.
Do regular exercise Exercise helps us sleep
better, de-stress and stay healthy, so its
extremely important for carers. If you feel
like you dont have the time to exercise,
try incorporating it into your routine, for
example, by walking to the shops instead of
driving.
Keep your stress levels in check If you notice that youre starting to feel more
stressed, or that you are stressed almost all the time, talk to someone about it.
Your GP may be able to refer you to counselling or other methods of support.
Make sure you get enough sleep If the person you care for has sleep apnoea, a
common symptom in MSA, it can be distressing and interrupt your sleep. But sleep
apnoea can be managed using a piece of equipment called CPAP (Continuous
Positive Airway Pressure).
Accept the situation Sometimes it isnt possible for things
to be better or easier so its important to recognise how
well you are coping in a very difficult situation. Just
acknowledging this may help you feel better.

Carers Guide | Looking after yourself and the person you care for

15

Looking after yourself

Tips on looking after yourself

Its natural to go through a wide range of

emotions when caring for someone with
MSA. As the condition progresses, and your
relationship with the person youre caring
for changes, so will your feelings.

Find some time for you Even taking a short break from caring can make a huge
difference to how you feel and your energy levels. You can get details of respite
opportunities from the Carers Trust. Alternatively, ask your GP or social worker.

You may feel you dont have the time to

worry about your own emotional wellbeing,
or you may think it selfish to do so but
this isnt the case. Looking after the way you
feel is just as important as looking after your
physical health.

Talk to someone about how youre feeling Dont keep your emotions bottled up as
this could make you feel depressed, angry or resentful in the long term. If you cant
talk to family or friends, try to attend a local support group and chat to other carers.
Access support online If its not practical for you to attend a support group in
person, join the Trusts online forum. You can also use Skype to chat to other carers
youve met, or stay in touch with family and friends.
Keep doing something you enjoy This might be going to work, or something as
simple as reading, gardening or walking. Do anything that makes you happy, even if
its just for a few hours a week.

Support groups
Lots of carers find it useful to get to know
other carers of people with MSA through
a support group. Sharing your ideas and
experiences can really make a difference,
especially if you dont feel you can talk to
family or friends about what youre
going through.
The MSA Trust offers two types of support group: our online
forum, which is moderated by MSA Trust specialist nurses
and can be accessed through our website, and physical
support groups in different locations across the country.
You can find your nearest support group using the MSA
Trust Local Hub.

I carried on
working throughout
Marinos illness. It paid the
bills, but more importantly
I enjoyed my work and it
helped me keep some sense of
normality.
Linda, cared for her
husband

You can also visit your local carers service. As well as

being a great source of information and advice, these
often hold events such as coffee mornings and massage
days. Visit the Carers Trust website for details of carers
services in your area.
You may need to arrange respite care in order to be
able to attend support groups or carers events. See
the section on Getting help with practical things for
more information about this.

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MSA Trust
020 7940 4666
www.msatrust.org.uk
MSA Trust Nurse Specialists:
Samantha Pavey (East of England)
0203 371 0003
samantha.pavey@msatrust.org.uk

Useful
contacts

Jill Lyons (Wales and the West of England)

01934 316 119
jill.lyons@msatrust.org.uk

(For Scotland residents)

Care Information Scotland
08456 001 001
www.careinfoscotland.co.uk

Other organisations
Citizens Advice Bureau
www.citizensadvice.org.uk
Or visit your local bureau
(see the website for locations)

Katie Rigg (Scotland, Ireland and the North of England)

01434 381 932
katie.rigg@msatrust.org.uk

Help the hospices

020 7520 8200
www.helpthehospices.org.uk
info@helpthehospices.org.uk

MSA Trust Forum

www.msatrust.org.uk/our-forum

NHS
www.nhs.co.uk

MSA Trust Local Hub

www.msalocalhub.org.uk

UK Government (benefits information)

www.gov.uk/browse/benefits

Carers organisations
Carers Trust
www.carers.org
support@carers.org
Carers UK
0808 808 7777
www.carersuk.org
Carers Direct
0300 123 1053
www.nhs.uk/carersdirect
Working Families (helps working parents and carers achieve a
work-life balance)
0300 012 0312
www.workingfamilies.org.uk
advice@workingfamilies.org.uk

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Carers Guide | Looking after yourself and the person you care for

REVISION DATE: 06/14 | REVIEW DATE: 06/16 | VERSION: 1.0

DISCLAIMER
We have taken every care to ensure the accuracy of the information contained in this publication. It is
produced independently, is not influenced by sponsors and is free from endorsement The information should
not be used as a substitute for the advice of appropriately qualified professionals, if in any doubt please seek
advice from your doctor or legal professional.References for this information sheet are available by contacting
office@msatrust.org.uk.
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Carers Guide | Looking after yourself and the person you care for

19

Multiple System Atrophy Trust

Information, support, education and research
Free services for people with MSA, carers, family, and
health and social care professionals
Southbank House
Black Prince Road
London, SE1 7SJ
Phone 020 7940 4666
Email office@msatrust.org.uk
Website www.msatrust.org.uk
Registered in England and Wales as Charity No. 1137652
Registered in Scotland as Charity No. SC044535
Company No. 7302036